I have had some interesting discussions lately with some “super parents”. They are parents that don’t take no for answer. Some do it in a peaceful way, some with a little more of a militant flavor and some exceeding most of us by becoming medical research leaders in the area of their child’s disorder. This article is one of three on the principles these parents practice to become successful advocates.
Principle One: Knowledge and Research
The way successful parents advocate is as different as their personalities, but what they do and how they do it is similar and worthy of some attention and documentation. When I hear parents begin to tell me of their battles to get what is best for their child, I am beginning to ask, “If you had to summarize what you have learned about being a parent advocate and had to boil it down to a few principles or points, what would they be?” I am getting some interesting comments and information.
One of the big ones is “study and read”. Successful advocates scan the Internet for any new research on the illness or disability their child has. They get involved in groups and forums online. They also subscribe to journals and magazines if they are available.
One parent told me that she is fortunate that she can stay at home. Because of that, she has the time to read-up, research online, attend conferences and be knowledgeable. “A lot of parents don’t have the time to invest in learning about this the way I can,” she said, “and so they don’t know their rights or the laws that effect their children at school. They aren’t knowledgeable about the new developments in support for their child’s illness or disability. “
I was directed by a parent of a CP child to an amazing article written by Andrew Brereton who had a son with profound quadriplegic cerebral palsy. His son passed away 4 years ago from a series of brainstem strokes. He has a support site called “snowdrop” for CP.
I think out of a sense of recovery from grief and a desire to help find treatment for children that have his son’s disorder, Andrew began to go back to school and work on his degree in psychology. He went on to gain his Masters in cognitive neuropsychology. he has been involved in research projects that assist in understanding more of the inner workings of the neuro networks in the brain, and research in the development of communication skills. There was a passage of his writing that I cannot summarize or put into my own words. You need to read them for yourself:
“Sadly, Daniel passed away four years ago last month. We miss him terribly and there will always be a massive hole in our lives. How do you get over the death of a child? However, the snowball of enthusiasm and interest, which he created in me, – interest in helping to solve the problems many children face, rolls on. Using all of the knowledge, which my son passed to me,(despite all my qualifications and research experience, he remains my most astute tutor), I am in the process of setting up a child development consultancy called ‘Snowdrop.’ It is in its infancy, but it aims to take all the knowledge and experience amassed over the years and to utilize it for the benefit of children and families like ourselves.”
I cannot relate to this level of grief myself and hope I never have to, but I have the desire to help parents see the best for their children. My enthusiasm in my work as an assistive technology specialist is balanced between being an advocate for the schools I serve and the parents I serve, but my foremost and first concern is what is best for the child. Since I see lots of teachers and parents, administrators and specialists work with policies and protocols, I have a lot of examples to draw from. I know that the people I see the best service from are the ones who take time to be up on the latest information on equipment, therapies and technology that is available. Since things change so much, I would encourage you to search, read , blog, and join forums to hear what others are saying. There is a wealth of information out there waiting for you to discover. Look for the next article in this series, which will be on Principle Two: “Fostering Positive Relationships”